This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

Monday, September 17, 2012

Finley was born on September 14th, at 9.51, weighing 3.450 g. It was a difficult birth, and he had some respiratory distress in the beginning, but he is a real trooper now. All went well in regards to my feeding tube.

Monday, September 10, 2012

Sunday, September 9, 2012

There are two parenteral iron formulations available in Austria at this point - iron sucrose (Venofer) and iron carboxymaltose (Ferinject). Ferinject is the new high-end product as it enables you to get up 1000 mg of iron in one setting, whereas the Venofer needs to be given at 200 mg levels over several weeks. Before I got pregnant I always received Venofer through my family physician. But my family physician did not want to administer IV iron in her office during my pregnancy, and I therefore had to go to the hospital to get my IV iron. At the hospital they only have Ferinject available, and at first I was supposed to get (as per orders from the hematologist) 1000 mg of iron in one go. I read up on it on the internet of course, and found some worrying accounts that high dose iron can lead to iron overload and more reactions than low-dose iron like Venofer. That's why Ferinject is not FDA approved in the US. Low dose Ferinject is usually not given as it is so much more expensive than Venofer and for low doses Venofer is selected.
When I had my first iron IV a few months ago I asked my OB-gyn to please split the doses and only give me 500 mg in one setting. In the end I only received the 500 mg, as I had a good response to it, but of course it only kept me going for a few months and a couple weeks ago blood tests showed that my iron stores were once again depleted. I was so hoping that I would not need another iron infusion until after the birth, as I did not want to subject myself and especially little one to another high dose of Ferinject (anything between 500 and 1000 mg is considered high dose). I voiced my concerns and thank god my OB-gyn decided to go with my plan to only give me half a vial of Ferinject - making it a dose of 250 mg.
When I went to the hospital last week I had a feeling that I had to be extra careful about the correct dilution of the Ferinject (I had looked up the package insert for Ferinject online before and knew that 250 mg needed a different dilution than 500 mg - only 100 ml of saline compared to 250 ml of saline.) and my vigilance payed off. When the intern took me back and wanted to hook me up I looked at the bottle - 250 ml of saline. At first I didn't know how to approach her about that - I did want to be that "know-it-all-patient" and question her expertise, but at the same time I knew that Ferinject loses it's stability at a high dilution like that, and there was no way that I would subject my little one to that. I told her that I had thought that 5 ml of Ferinject needed to be diluted in 100 ml of saline and that this was 250 ml. She told me that she had diluted it according to instructions they had hung up in the doctor's room. I then pulled up the package insert on my smart phone (thank god for smart phones and mobile internet :-) and showed her the instructions. She did get a bit insecure then and said she was going to phone the ward again. Five minutes later she came back to tell me that I was right. I thanked her for taking me seriously and was quite happy to have intervened.

Still - this story made me very thoughtful. I am a very pro-active patient, I check up on things like that, I can speak up for myself - but is it really my task to check up on a doctor's actions to keep myself safe? What about people that can't do that?

Tuesday, September 4, 2012

I had another check-up with my doctor last week, found out that little one is in the 97th percentile of weight for his gestational age - yikes.... my doctor promised me to not let me get too far past my due date :-). It was also determined that I needed another iron infusion, and I had that done last Thursday at the hospital. I opted for the lower dose which will probably tide me over until the birth, but will have to re-load on iron yet again most likely right after.

Little one has started to settle down lower in my pelvis making me a bit less mobile than I was before. Now that I am in my 9th month of pregnancy, I am starting to get tired - sleepless nights, not knowing how to position myself in bed, sitting can be quite uncomfortable, standing even more, walking still okay but leads to an immediate feeling of having to go to the bathroom - I am well aquainted with all the public bathrooms now :-).

I am trying very hard to keep myself occupied - doing lots of sewing for the little one, bought a new camera and a book to go with it, and still need to complete my wedding scrap book. There are days when I hope for him to make an earlier appearance and than the minute after I realize that there is still so much I want to get done :-).

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.